Ughh!! Bulbar onset ALS!! Why???

[melfish]

I think I will take the word of the numerous PALS and CALS over one random person who seems to have come here to create fear with sweeping and untrue generalisations

[AntsyVee]

Well, I’m still waiting for your ass to go to the doc, Mel . And then I’m gonna have a “Mel doesn’t have ALS” party in your honor so I have an excuse to have a drink.

[melfish]

Well, I’m still waiting for your ass to go to the doc, Mel . And then I’m gonna have a “Mel doesn’t have ALS” party in your honor so I have an excuse to have a drink.

I will join you!

[Carys]

good grief, what a reception when I was simply making the point as was another poster, that he doesn't have the symptoms.

I've been on here for years trying to help people, and this...

'one random person who seems to have come here to create fear with sweeping and untrue generalisations'

...is a really nasty thing to say.

For the final time......I am saying that the changes (lets take out the word subtle as it seems to bother you) I refer to would happen BEFORE the lack of being able to swallow. There would not just be aspiration, that is the point, there would be other things, lots of other SMALL things (I've replaced that, instead of subtle). I realise you have your own fears of ALS, but the actuality of ALS is out there, the link from the other poster details it all! You seem to know all too well about ALS apparently, so will therefore know that recent research suggests that your tongue is an early indicator of bulbar onset. The OP doesn't have that.

[Josh1234]

How about just offer support without making untrue medical statements? No one is saying anything other than what you said about PALS always having subtle signs first is wrong. Which it is.

[Carys]

My statements are absolutely not untrure. ALS is called MND in the UK, here is a small portion from their literature...

Symptoms

Symptoms of motor neurone disease come on gradually and may not be obvious at first.
Early symptoms can include:

• weakness in your ankle or leg – you might trip, or find it harder to climb stairs
• slurred speech, which may develop into difficulty swallowing some foods
• a weak grip – you might drop things, or find it hard to open jars or do up buttons
• muscle cramps and twitches
• weight loss – your arms or leg muscles may have become thinner over time
• difficulty stopping yourself crying or laughing in inappropriate situations

Tests and diagnosis

It can be difficult to diagnose motor neurone disease in the early stages. There's no single test for it and several conditions cause similar symptoms.

ANd this from the ALS site...

The initial symptoms of ALS can be quite varied in different people. One person may have trouble grasping a pen or lifting a coffee cup, while another person may experience a change in vocal pitch when speaking. ALS is typically a disease that involves a gradual onset.
The rate at which ALS progresses can be quite variable from one person to another. Although the mean survival time with ALS is three to five years, many people live five, 10 or more years. Symptoms can begin in the muscles that control speech and swallowing or in the hands, arms, legs or feet. Not all people with ALS experience the same symptoms or the same sequences or patterns of progression. However, progressive muscle weakness and paralysis are universally experienced.
Gradual onset, generally painless, progressive muscle weakness is the most common initial symptom in ALS. Other early symptoms vary but can include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches, and/or uncontrollable periods of laughing or crying.


The OP says they have difficulty in swallowing foods BUT DO NOT HAVE slurred speech, which comes prior!!!! I have made no invalid medical statement at all, you yourself have however in saying that it can be sudden and dramatic.

I give up.

[Catherine S]

My statements are absolutely not untrure. ALS is called MND in the UK, here is a small portion from their literature...

Symptoms

Symptoms of motor neurone disease come on gradually and may not be obvious at first.
Early symptoms can include:

• weakness in your ankle or leg – you might trip, or find it harder to climb stairs
• slurred speech, which may develop into difficulty swallowing some foods
• a weak grip – you might drop things, or find it hard to open jars or do up buttons
• muscle cramps and twitches
• weight loss – your arms or leg muscles may have become thinner over time
• difficulty stopping yourself crying or laughing in inappropriate situations

Tests and diagnosis

It can be difficult to diagnose motor neurone disease in the early stages. There's no single test for it and several conditions cause similar symptoms.

The OP says they have difficulty in swallowing foods BUT DO NOT HAVE slurred speech, which comes prior!!!!

I give up.

Looks like Dr. Google has been brought to us. Not sure that's very helpful. Jamie was really only telling us that he's aware it's more likely that his fears are probably anxiety-led, and was really only asking for help in dealing with that.

[Carys]

I don't find it helpful that people entirely misread my posts and intention, with and make irrational and aggressive responses.

Please note, a link was posted on this thread that said EXACTLY what I too have stated in the same terms. This OP doesn't have the signs and symptoms of ALS, as listed on that link.

I will reply no further to this thread.

[Fishmanpa]

ALS, like many other serious illnesses, can manifest itself differently in every case. For some it can be a gradual loss of function, for others more dramatic.

It really doesn't matter because the OP doesn't have it nor does anyone else fearing it that's posting here

Peace and out!

Positive thoughts

[Catherine S]

I don't find it helpful that people entirely misread my posts and intention, with and make irrational and aggressive responses.

Please note, a link was posted on this thread that said EXACTLY what I too have stated in the same terms. This OP doesn't have the signs and symptoms of ALS, as listed on that link.

I will reply no further to this thread.

It was a link to the info Carys, so then people could choose to open the link or not. I don't think anybody was being aggressive, only that they disagreed with what you were saying. I think that was happening both ways though to be fair.